Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Blood Tests


cait

Recommended Posts

cait Apprentice

I've been gluten free for over a year now. While I've definitely noticed improvement, I can't seem to sustain it. I'll feel better for a while, and then slip back to feeling super fatigued. I've gone through elimination diets and cut out things that bothered me. Helped for a while, then started to backslide again. Am now pretty much following the whole 30 diet, though I seem to have trouble eating enough to maintain energy that way, so am having to alter it slightly. Even with that, I just can't get to feeling better. I don't have the stomach problems and headaches I did prior to dropping gluten, and am mentally/emotionally in a much better place. But my energy level is awful. I want to get my thyroid checked, especially since my hair continues to fall out, but am wondering if there are other things I should check on as well. My doctor will prescribe whatever tests I ask for-- I just need to know what to ask for.

Any suggestions?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

I suggest:

Thyroid tests: TSH, Thyroid antibodies, Free T3 and Free T4

B-12 levels

Iron (RBC)

hematocrit

ferritin storage levels

FOLATE level

Vitamin D level

These are the ones linked to fatigue, energy and hair loss.

(the Folate anemia is the one that really messed me up)

But others may have more suggestions.

cavernio Enthusiast

-Zinc and Magnesium may also be low

Are you taking any vitamins? I got more energy even while eating gluten after taking B12 and iron for a couple of months. I don't know what the '30' diet is. Do you much eat meat?

-If you get short of breath also get them to examine your lungs and heart.

-You may have sleep apnea. Do you snore? Wake up with a sore throat? Does anyone else in your family have it? Has anyone else you've slept around ever noticed weird breathing at night? Hypothyroidism can affect sleep apnea too.

-Should probably get liver enzymes and kidneys checked

-Diabetes can make you tired

-Anything unsual about how often you pee?

-Are your periods usual?

cait Apprentice

-Zinc and Magnesium may also be low

Are you taking any vitamins? I got more energy even while eating gluten after taking B12 and iron for a couple of months. I don't know what the '30' diet is. Do you much eat meat?

-If you get short of breath also get them to examine your lungs and heart.

-You may have sleep apnea. Do you snore? Wake up with a sore throat? Does anyone else in your family have it? Has anyone else you've slept around ever noticed weird breathing at night? Hypothyroidism can affect sleep apnea too.

-Should probably get liver enzymes and kidneys checked

-Diabetes can make you tired

-Anything unsual about how often you pee?

-Are your periods usual?

Whole 30 is similar to paleo, so yes on the meat. I don't eat red meat because until last fall I had been vegetarian for about 15 years, and hadn't eaten red meat for years before that. Worried about how my body would react to it, and really don't like meat so far, so can only take on so much. I do think eating more protein has been helpful, but again has made no lasting difference. Pretty sure I don't have sleep apnea, but I do have two small children, so I do get woken up sometimes. Pretty sure that alone doesn't account for all of my fatigue, though. When I've had bloodwork done, my blood sugar has always tested fine, and I have no other reasons to suspect Diabetes. My periods are regular and annoyingly painful.

Thanks for the suggestions. I really appreciate all thoughts. Generally everything comes back completely normal when I get any testing done, so I'm trying to make sure there isn't some less commonly tested thing that I'm missing.

IrishHeart Veteran

They always forget to check the Folate level.

I had blood panels done over and over and that was not on it.

The B-12 level was tanked and so, I was supplemented, but I still felt like hell.

It kept me weak, fatigued and dragging for a while after DX.

When I read that it is often affected in celiac, I asked for the

test, and there it was. Very low. I supplemented with prescription strength folic acid for a few months and that bone-tired fatigue stopped.

Vegetarians sometimes are B-12 deficient.

These two anemias could be the problem.

IMHO

Skylark Collaborator

I had to look up Whole 30. I tend to get a little tired completely off starches and I feel better with maybe 1/2 sweet potato, a small serving of white rice, or some sprouted buckwheat crackers daily.

With the hair falling out, I bet it's thyroid.

cait Apprentice

Yes, I have had to be careful about that, Skylark. I have totally bottomed out on energy a few times, so I'm trying to be very conscious about carbs. Planning to try adding some rice or other grains back in carefully to see what my reaction is, because I need to have a few other options. I lost weight before figuring out the gluten thing, and I have yet to gain anything back despite noble efforts, so I'm trying to be on the least restrictive diet possible, while still avoiding things that make me sick. My normal range had been 125-135, but I seem to be stuck around 116. The hair loss totally makes me think thyroid (though I think my tests have generally been fine), but wouldn't difficulty gaining weight be a counter-indication? Obviously, I'm going to have them check it, because I don't think anyone ever ran all of the tests for it. I did test mildly hypo as a teen, but it seemed to normalize after a bit.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



beachbirdie Contributor

I've been gluten free for over a year now. While I've definitely noticed improvement, I can't seem to sustain it. I'll feel better for a while, and then slip back to feeling super fatigued. I've gone through elimination diets and cut out things that bothered me. Helped for a while, then started to backslide again. Am now pretty much following the whole 30 diet, though I seem to have trouble eating enough to maintain energy that way, so am having to alter it slightly. Even with that, I just can't get to feeling better. I don't have the stomach problems and headaches I did prior to dropping gluten, and am mentally/emotionally in a much better place. But my energy level is awful. I want to get my thyroid checked, especially since my hair continues to fall out, but am wondering if there are other things I should check on as well. My doctor will prescribe whatever tests I ask for-- I just need to know what to ask for.

Any suggestions?

I'm not going to ask your age ;) but another thought about hair falling out...you might want to get all your hormone levels checked, female hormones can cause hair loss when they are out of balance. If you are into your 40s, you might be considered perimenomausal and your hormones ARE beginning to shift. Whether at that age or not, Estrogen, estrone, progesterone, FSH/LH, testosterone, DHT all can figure into hair issues.

Are you taking any medications for which hair loss might be a side effect?

cait Apprentice

I'm not going to ask your age ;) but another thought about hair falling out...you might want to get all your hormone levels checked, female hormones can cause hair loss when they are out of balance. If you are into your 40s, you might be considered perimenomausal and your hormones ARE beginning to shift. Whether at that age or not, Estrogen, estrone, progesterone, FSH/LH, testosterone, DHT all can figure into hair issues.

Are you taking any medications for which hair loss might be a side effect?

I'll be 35 in a week. Hopefully not perimenopausal yet, but hormones probably worth checking. I'm only taking vitamins/supplements now, including biotin, which is supposed to HELP with this. The only trace of prescription left is the antidepressant I'm weaning from to finish eliminating corn.

Skylark Collaborator

Yes, I have had to be careful about that, Skylark. I have totally bottomed out on energy a few times, so I'm trying to be very conscious about carbs. Planning to try adding some rice or other grains back in carefully to see what my reaction is, because I need to have a few other options. I lost weight before figuring out the gluten thing, and I have yet to gain anything back despite noble efforts, so I'm trying to be on the least restrictive diet possible, while still avoiding things that make me sick. My normal range had been 125-135, but I seem to be stuck around 116. The hair loss totally makes me think thyroid (though I think my tests have generally been fine), but wouldn't difficulty gaining weight be a counter-indication? Obviously, I'm going to have them check it, because I don't think anyone ever ran all of the tests for it. I did test mildly hypo as a teen, but it seemed to normalize after a bit.

Hyperthyroidism can cause weight loss, hair loss, and fatigue. Perhaps you've gone the other direction.

I find that white rice is easier on my system than brown, becasue it is very low in grain lectins. Sweet potato is great because it's not even a nightshade.

frieze Community Regular

I'll be 35 in a week. Hopefully not perimenopausal yet, but hormones probably worth checking. I'm only taking vitamins/supplements now, including biotin, which is supposed to HELP with this. The only trace of prescription left is the antidepressant I'm weaning from to finish eliminating corn.

you are on the low end, but perimenapause is not out of the question.

  • 1 month later...
cait Apprentice

I'm totally confused now. As I expected, everything came back normal. Before I got the results though, I started experimenting with b12, and it made a huge difference. I felt human again, and had energy despite the fact that we were traveling and I should have been exhausted. I figured I must have been on the low end of normal and continued taking it until I got back home. Yesterday I picked up a copy of my results, and it turns out my b12 was actually too high before starting the supplement. 1370 where top of the range is 946. If my levels were too high to begin with, why would taking it have made such a difference for me? Is it possible that my body can't process what's there and was getting something from the sublingual that it can't create from what's already there? (the sublingual was the methyl form where I'm sure the b complex I took until a year or so ago was the cyano-whatever) Or am I just crazy?

My thyroid, btw, seems to be fine. TSH 1.35 (.45-4.5 range), Free T4 1.25 (.82-1.77 range), Free T3 1.88 (1.81-4.06 range). T3 is on the low end of the range, but I don't know what, if anything, that means.

beachbirdie Contributor

With a low FT3 it is possible you are not converting your T4 to T3. T3 is the active hormone picked up and used by your cells, T4 is sort of a "storage" form, and the body converts it to T3 as needed. If your FT3 is too low, you can feel hypothyroid even with normal T4 levels.

Are you by chance taking any thyroid medication?

Just went back to re-read original post...guess not!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    2. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.